“It’s like a time bomb for them. My daughter’s had a baby who will probably inherit it and wants another because she thinks by the time they get to 50 there will be a cure.

“But, that’s the same thing I thought when I was her age. We have just learnt to accept it but now I have no energy, I’m sick most days and have a grey complexion. At the moment I’m restricted, I’m wiped out and I can’t walk to the end of the road.

“It’s heartbreaking for my children to watch me and my mother like this knowing it will happen to them."

Jayne is now on the waiting list for a kidney transplant and has urged others to sign on the organ donor register and support the PKD charity.

She said: “We need a system where you don’t opt in for the register and, instead, you have to opt out.

“A new kidney would be an absolute miracle for me, it would give me a new lease of life.

“I have been waiting on the list for 18 months and I keep hope.

“They do seem to be working on a cure and there does seem to be awareness about the disease but there needs to be more.”